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08-09-2012, 05:08 PM   #1
amyrenee
 
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Hi - I'm a Crohn's Mom

Hi Everyone,

I hope it's ok to post as the Mom of a Crohn's patient. My daughter was diagnosed at 19, after her first year of college. Long story short: she was first put on prednisone, then Imuran + Asacol. Imuran made the toxic by-product (apparently happens in about 1/3 of Imuran-takers). Eventually, we went to Mayo Clinic in Rochester (where Dr. William Sanborn used to be, he is now at UC-San Diego and I would probably follow him to the ends of the Earth) and she was put on Remicade (yes, I dreaded it but now that she's been on it since 2006, I realize that for us, it was the answer - for now). The DAY after she was on Remicade, her symptoms immediately subsided. I know that this does not happen for everyone and that we were lucky (although being on Remicade is a big deal). I do worry about long-term effects of Remicade (the research community only has safety data on it since 1998 for CD), but it was that or being sick all the time, so the decision was a no-brainer. So far so good, after 6 years of Remicade; although I'm seeing some possibly-CD associated symptoms at trough (around 7 weeks after Remicade, the last week before it's due again) and we're keeping our antennae up to see if we have to change to 7 week intervals (I'm hoping not, because that means the beginning of the end of Remicade, even though she could continue for several more years).

She has about 22" in the terminal ileum affected. No surgeries! And right now, just Remicade; nothing else.

Looking forward to meeting you all and to continued discussions.
08-09-2012, 07:34 PM   #2
Farmwife
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Hi and welcome,
I'm so glad your girl is doing well. I'm from the parents forum. My little girl is 3 and is still undiagnosed at this point. However I'm coming to learn the GI thinks she has it but wants to wait until another flare up to do anything further. So my advice is limited at this point. We do have a great parents forum here. Some have kids as old as yours or even older, to as young as mine and younger than that.

I was wondering what are some of the symptoms she still has.
I know from reading other post here,
that a lot of symptoms people with IBD think they
have to live with, but sometimes they don't.

Welcome aboard!
Farmwife
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
08-09-2012, 07:48 PM   #3
xmdmom
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Hi amyrenee,

My son, 19, was just diagnosed at the end of May, after his first year of college.

Glad to hear your daughter is doing well!

xmdmom
08-10-2012, 12:48 AM   #4
amyrenee
 
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Dear Farmwife and xmdmom,

Farmwife, I'm sorry you're dealing with this as young as 3. I for one believe that this disease was always there, but it manifests itself clinically at different times. It is a disease that begins at birth/in utero and the inflammation progresses until it shows up clinically. Anyway, that's my hypothesis.

My daughter actually doesn't have ANY symptoms. The last 2 Remicades she's had a few weird things at trough, mostly skin rashes or a skin lesion. Last time she had 2 days of burning mouth, which worried me. Otherwise, when Remi is doing its job, NO symptoms. So it's been a godsend; but I have the utmost respect for Remi as a drug. I don't take a day for granted, yet it almost seems like nothing is wrong and we're having a normal life. But in our case, Remi was the answer, at least for now.

Xmdmom, what is your son on? Can you give me more of an idea of what you've been going through? FarmWife too, I'd be very interested to hear more.
08-10-2012, 02:58 AM   #5
Angrybird
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Hello and welcome to the forum, I am really glad that your daughter is doing well

When she has the infusions is she given anything before hand? Have you spoken to the GI doc/nurse about the rashes/burning mouth?

If you have not already then please do pop over to our parents forum, there are a lot of mum and dads here to also have a good chat with: http://www.crohnsforum.com/forumdisplay.php?f=49.

AB
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DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
08-10-2012, 11:07 AM   #6
amyrenee
 
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Hi AngryBird - yes, she gets Solumedrol in the IV and takes Claritin in the 10 days around the infusion. Thanks for the link to the parents' forum!
08-10-2012, 01:04 PM   #7
David
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Hi Amy and welcome from a fellow Floridian. I'm glad you joined though I'm sorry to hear of your daughters plight. Thank goodness for the Remicade though!

With disease in her terminal ileum and those trough symptoms, have they tested her vitamin B12 and vitamin B9 (folate) levels? If so, when, and what were the specific levels?

While she might not technically be a kid, I know she'll always be your kid. As such, you may want to connect with other parents in our parents of kids with IBD forum. They're a wonderful group of people.

I wish you and your daughter all the best
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08-10-2012, 02:08 PM   #8
xmdmom
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My son had a 10 lb weight loss, diarrhea, fatigue and anemia that began second semester, though he had other mild symptoms for years. (He was always skinny, and weighed 121 at 6' at his lowest weight.) He ended up taking 2 incompletes because he was too tired and sick to finish. He was lucky to get diagnosed quickly with an endoscopy; his disease seems limited to the ileum, though he had some erosions in the stomach, the doctor didn't think it was Crohn's.

He just finished 8 weeks of prednisone and is on budesonide. He has some symptoms which are probably Crohn's inflammation coming back (Yikes!)
It's very difficult because his college is 7 hours a way w/o good transportation and there's no gastroenterologist in the college town. There's an excellent center 45 min away - but no bus and my son doesn't drive. So, we're all worried about what he'll do if he gets sick while at school and how Crohn's may interfere with his educational plans. He's an extremely serious student and school was tough w/o a medical issue. Given the lack of good medical care in his collegetown, I'd be really afraid for him to be on a drug that could have serious side effects. We really don't want to go to immunosuppressants or biologics (at least at this time). He just saw a doctor this week to see if he could try low dose naltrexone.

I am a physician by training, which is a double edged sword. I can understand the scientific papers and know how to make the medical system work well for my son. On the other hand, I also know too much about the risks and complications of drugs and the illness. And I am risk aversive by nature and as a result of seeing pretty much everything when I worked in a tertiary care hospital.

Amyrenee - how did your daughter do in college? Was her college near home? Do you have any advice of things that helped her cope at school?
08-10-2012, 09:50 PM   #9
amyrenee
 
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Hi xmdmom,

I assumed you are a physician with your screen name (lol). I am an epidemiologist and also 'know too much'. We didn't have a choice about my daughter going on Remicade. She was on Asacol at first, which didn't do ANYTHING. Then Imuran, which did not work, since she made the toxic by-product. She was still having symptoms in college, lots of fatigue (interestingly little diarrhea) and stomach pains and it was just not going to work. I was very concerned about Remicade, and there have been multiple studies and meta-analyses about the L word and they've concluded it's not the infliximab. After she went on Remicade there were no symptoms, so she finished her college years with little problem related to CD. She has been able to live 100% normally since Remicade. It obviously doesn't work on everyone, but for her it gave her life back.

I understand about not having a GI around the college. My daughter went to school in NY and we live in FL, but there were plenty of GIs around. Honestly I don't know what we would have done in your situation - I guess you can aways drive to get him and take him to the Dr or fly him if he needs emergency care (hopefully that does not happen). I don't think Imuran or Remicade have serious side effects, at least it's not common. For us it was all about getting her sx under control so she could live a normal life. And though I had been trying to avoid Remicade, when we took her to Mayo Clinic-Rochester, Dr. Sanborn said Remicade (I knew that was the only way out at that point).

My advice to get him through school is to try any med that will allow him to focus on his work and not worry about his sx. I am curious about LDN, but it is not good to let the inflammation continue, since it often becomes progressive over time. Dr. Sanborn said the most important thing is to control the inflammation and get the sx under control. Of course we all have to decide what we are willing and not willing to risk.

Sorry about the length... I'll stop now!
08-10-2012, 09:56 PM   #10
amyrenee
 
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Hi David,

That's a great suggestion. I think her B12 is a bit low, and I will check on the exact levels (can't do it for a few weeks).

And am I not supposed to be in this forum? It's only for Crohn's patients? Though I certainly will check out the kids forum; I don't think there's a forum for parents with older kids...
08-10-2012, 10:08 PM   #11
David
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Amy, you're absolutely supposed to be on this forum! This entire website is your new home if you want it to be I thought you might like connecting with other parents, thus the suggestion for the parents of kids area.

In regards to the B12, since you're a doctor, you might have a little better luck getting what you want with other doctors. I'd suggest having her methylmalonic acid levels tested instead of B12 as it's a much better indicator of deficiency. Serum B12 is ok but the current range that is utilized is terrible and many are actually deficient despite being "normal" or "low normal".
08-11-2012, 07:31 AM   #12
xmdmom
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Amyrenee, as an epidemiologist , what do you think about HSTCL and Remicade? http://www.fda.gov/Drugs/DrugSafety/ucm250913.htm
I would feel less concerned if my son wasn't a teenage male.

Yes inflammation = bad ...we are taking it one step at a time... I wish there were better choices. My son is interested in helminth therapy (which could be available in a few years).

It's wonderful that Remicade has worked so well for your daughter. I don't think my son could arrange the infusions in his collegetown-- the hospital is dinky. If he needs Remicade, he will most likely need to move back home, and he'd be heartbroken. His college is a pretty perfect fit for him except for the lack of transportation and health care! We live in a university town in upstate New York, and the medical possibilities are better but not stellar.
08-12-2012, 01:42 PM   #13
amyrenee
 
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Hi Xmdmom,

There are newer data (http://www.clinicaloncology.com/View...842&a_id=20894) showing that there is no increased risk for HSTCL with inflximab treatment, and that the cases reported were in patients taking Imuran or another immunomodulator with infliximab. I think you must balance the ability of your child to live a 'normal' life and the problems they face with chronic symptomatology with the possibility of living without them and at the same time, slowing down the inflammation, which over time, is debilitating.

If he ever decides to try Remicade, it's once every 2 months (after you get over the start-up schedule), so he could come home for it and miss one day of school. However, PLEASE do not feel that i am pushing Remicade in ANY way. You have to do what you feel comfortable with. I obviously didn't feel comfortable with Remicade at the beginning, but the HSTCL cases seem to occur early on (within the first 1-2 years of starting) so I feel like we've made it over the hump. Of course I worry about potential long-term effects that the medical community doesn't know about yet, but I think the biologics are a new class of drug that will be adapted to treat many diseases (they are not necessarily like the old chemo drugs/radiation that caused CHF in people who were treated decades ago)... so I have to be positive about it. It works like a charm for us, so we're just counting our blessings.

You can also check the Centocor/Remicade website to see where the infusion sites closest to him are. That said, I know many people have failed Remicade so it's not necessarily the 'answer'. Best to you and your family!
08-12-2012, 01:47 PM   #14
amyrenee
 
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David,

I am not a 'real' doctor :-) . I'm a PhD. I haven't heard of methylmalonic acid, but I will ask my daughter's internist about it. If these levels are low, does that call for B12 shots?

Thank you for your suggestions!
08-12-2012, 02:43 PM   #15
Livilou
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Hello Everyone! I too work in the medical field (RN) and I have to say, "Ignorance really is bliss!" I drive myself crazy sometimes over worry about side-effects from CD drugs. I have 2 teens with moderate-severe CD. My son is 19 and has been on Remicade for 18 months and doing really well, no real side effects to complain about and a recent MRE showed no inflammation-this stuff really works. Trevor goes to college locally, so no worries for Mom there...I can watch him like a hawk everyday! However, my almost 17 year old daughter, who was diagnosed much younger and has already required resection surgery for small bowel obstruction, is set on going to college away from home. Liv is currently on LDN...failed 6mp and developed thyroid cancer while on humira. She is doing well on LDN (on the outside), anemia resolved, all labs look good, color is great and gained 7lbs! However, after a recent bout of rectal bleeding, we are awaiting a scope to see what is actually going on inside. If LDN is not adequately controlling inflammation, we are looking at methotrexate. I am terrified of sending her off to college..I find myself researching local hospitals and GE's in the area, miles from college...ect...I also worry about getting to her quickly in case of emergency. I have to let her go, but it's going to be tough ...she is very compliant with her meds and is very open to me when she has symptoms, so I just have to take it day by day, and hopefully all will be fine. Thank goodness we have this forum...so many wonderful and supportive people here! Kim
08-12-2012, 02:57 PM   #16
amyrenee
 
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Dear Livilou,

My heart goes out to you with two kids with CD. I go nuts with one! You must be strong throughout all this. I am glad that you found this forum because our regular friends can't relate to us on these matters, and it's so important for us to have each other. I totally understand your concerns and worries. This disease is a 'worry-Mom' producer, that's for sure.

What does the doctor say about your daughter going on Methotrexate? Do they think Humira was causally linked with the thyroid cancer (I've never heard about a connection between the two, though we might wonder what else would cause thyroid cancer in such a young person?).

My daughter had already left for college when this whole thing started, so I was lucky that we found a great GI in her area. I made many trips to NY (from FL) and we took her to Mayo Clinic-Rochester MN when she failed Imuran. We've been there twice and they were fantastic. It's difficult to prance around the country to go to the best doctors, and also logistically challenging, given that our kids are in school, etc. Livilou, when considering which college Liv will go to, perhaps take the location and availability of GIs into consideration. Unfortunately, we have an extra piece of the puzzle to deal with.
08-12-2012, 03:38 PM   #17
Livilou
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Hello amyrenee! I am so happy that your daughter is doing well on Remicade...it has really made a huge difference for my son, his quality of life was really suffering before remi.
My daughter has a new GE, as her former GE and I were not seeing eye to eye anymore since her cancer diagnosis. The former GE wanted to put Liv back on Humira, however, not only was I terrified about restarting biologics, but Liv had other severe issues while on humira, such as oral thrush and skin lesions that turned into cellulitis-requiring antibiotics (3x!!)...she was only on the drug for 5 months. We thought about restarting Remicade as well, but she failed that 3 years ago, and I worry about severe antibody reactions with reintroducing the drug (as well as the black label cancer warnings!) He would not prescribe Cimzia (b/c she is under age 18) and refused to try methotrexate (she failed 6mp-and had elevated liver enzymes while taking it). I was not happy with going back to humira...so found a new GE who is very patient with us trialing LDN, but made me promise to go back to traditional CD meds if inflammation continues..fair enough for me. Liv has been so very sick with CD flares...I fear the CD more than the cancer risk of restarting biologics!!!! However, new GE would like to hold off on biologics in light of the cancer, he would like to start with methotrexate and see how she does. In the meantime, I keep praying for some new drugs for CD-preferably with less side-effects! I know there are new ones in the pipeline.
Liv would like to study in NYC...she is going to be a theater major, so, only about an hour away, with lots of great GE's and hospitals nearby...works for me. She is interested in a few schools upstate NY and maybe Boston..we shall see.
BTW, docs are not sure about the humira causing the cancer..there is not enough written. I always think that maybe the 6mp could have been a culprit??? (She was on that for over 5years). Or maybe she was going to get thyroid cancer with or without the drugs...we saw top docs in the field...out of Mt. Sinai NYC and Sloan Kettering cancer center...they had no answers for me, all just scratched their heads.
So happy to be on this forum...I actually look forward to logging in...awesome people here with lots of knowledge and support!!! Kim
08-12-2012, 04:01 PM   #18
David
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I haven't heard of methylmalonic acid, but I will ask my daughter's internist about it. If these levels are low, does that call for B12 shots?
Methylmalonic acid is raised when people are deficient in B12. Serum B12's cutoff for deficiency is usually around 200pg/ml depending on the lab. The problem is, as this paper showcases, upwards of 50% of people with "normal" serum B12 levels between 200 and 400pg/ml are actually deficient based upon the much more exact methylmalonic acid level test.

We've found that getting doctors to test B12 levels can sometimes be hard despite rampant deficiency in Crohn's patients. We've found getting methylmalonic acid levels tested is MUCH harder so we don't push it too much but suggest people take in papers like the linked one. We try to educate members about the probability of deficiency despite their "normal" B12 levels and to work to maintain a level in excess of 500pg/ml due to this.

As you're no doubt aware, being able to talk the talk helps a lot.
08-12-2012, 05:26 PM   #19
xmdmom
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Hi Livilou,

NYC sounds like a good place for college with lots of doctor and hospitals, great theater and close to home. If I had known my son had Crohn's when he was applying to college, I would have steered him away from his present school because there aren't any gastreoenterologists in the town and it's 6 or 7 hours by car in good weather.

I can understand why you'd rather her stay off Humira. I really hope the scope shows healing on LDN!
08-12-2012, 09:10 PM   #20
Livilou
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Thank You xmdmom! Liv is interested in applying to SUNY Fredonia...it's an 8-9 hour drive and I hear it's in the middle of nowhere! Apparently, that school has an excellent theater program, but I am too nervous to let her go that far...NYC feels like a better fit for everyone! Good Luck with your son...these are tough choices that we have to make for our precious children. Is LDN a possibility for him? Kim
08-13-2012, 06:26 AM   #21
xmdmom
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I live in upstate NY and would agree that Fredonia is far, and even farther in the winter.

We are trying to get LDN. He saw an internist who is considering it and will get back to us in a couple more days...
08-13-2012, 09:55 PM   #22
kabbyswartz
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I'm so sorry to hear about this! However, it kind of makes me feel better to know there are other 19 year olds with Crohn's. Although I was diagnosed much younger (6 years old). I am actually about to start college and am very anxious about what its going to do to my disease, but I'm hoping for the best. I was also a weird one with the Remicade, having results in less than a day, and I have been on it for 6 years now. The only long term (if you called 6 years long term, I guess), is that my body is beginning to create antibodies. I really hope everything goes smoothly for you, and let her know that I'm saying a prayer for her and the start of a new school year with Crohn's. Thank you for sharing your story!!
08-13-2012, 11:45 PM   #23
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Hi amyrenee,
I'm also a new member and a parent of a child (son) with crohn's disease. This forum is so wonderful that you can post wherever you want and there's always some very kind, informed person to get you where you need to be

I'm curious as to whether you are still going to Mayo Clinic and if so, who are you
seeing?

Welcome to the forum and good luck!

mammabear, mother of John
08-14-2012, 11:27 AM   #24
amyrenee
 
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Dear mammabear,

Thank you for your kind welcome. It IS nice to have somewhere to go where people understand what you're talking about and feeling. I feel lucky to have found you.

We haven't gone to Mayo for a long time. We went twice about a year and 18 months after my daughter was diagnosed. Since then, Dr Sanborn moved to UC-San Diego. The second time we were at Mayo, we saw Dr. Ed Loftus. He is also great.

R hasn't had a colonoscopy in 5 years so we're thinking we'll get it done locally in FL. Not sure though, because I would prefer doing it at Mayo but daughter does not want to go that far for it, since Remi she has pretty much zero symptoms.

Tell me more about John!
08-15-2012, 10:11 AM   #25
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Hi amyrenee and mamabear,

Just wanted to welcome you to the forum as well! As I'm sure you've already found, this forum has many wonderful members who always share their knowledge and support - it's been invaluable to me since my son was diagnosed.

My son is 18, was diagnosed last May, just before turning 17. My son had similar symptoms to xmdmom's son - weight loss (almost 25 lbs), fatigue, anemia, fevers, diarrhea, etc. It took a couple of months to get a diagnosis. His treatment was six weeks of enteral nutrition (and one week of IV Flagyl), this took him into remission. Since then, he has continued on EN as his maintenance treatment (1/2 dose with all foods added back to his diet) and he has done well with only sporadic, minor symptoms. Unfortunately, his CRP and Sed have been increasing slowly but steadily and his most recent test showed elevated liver enzymes . So, sadly, I am expecting that he will have to begin some medication. I am so hoping that his GI will agree to LDN!

I also completely understand the worries of our kids heading off to school! Worrisome enough when we can see them everyday and 'see' how they are; I'm sure I'll be a wreck when my son goes away to university! Luckily, I have a short reprieve as he's chosen to return to high school one more year (an option we have here in Ontario)

So hard to see your child sick and know you can't fix it! But, wonderful that we've all found this forum - such a help to share and learn from others who truly understand!
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Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
08-15-2012, 12:22 PM   #26
amyrenee
 
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Thanks for sharing your story, Tesscom! LDN is so popular these days. When my daughter was diagnosed it was not mainstream at all. Can someone send me a link to a paper in the literature showing how effective it is? What is everyone's feeling about LDN?
08-15-2012, 01:35 PM   #27
Tesscorm
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Amyrenee, you'll find info in the subforum Low Dose Naltrexone (or LDN???) under the Treatment forum. As well, in the Parents of kids w/IBD forum, there is a thread also entitled LDN - lots of info and opinions there. One member, Kev, has used LDN for many years and has posted tons of info re his experience and LDN, in general. Both the LDN subforum and thread have lots of links to publications.
08-15-2012, 03:59 PM   #28
amyrenee
 
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ok, thanks Tesscorm. I also went on Pubmed and searched; there are really no scientific data about LDN that I could find by searching "Crohn's AND low dose naltrexone". There is one small trial.
08-15-2012, 04:37 PM   #29
xmdmom
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Here is the placebo controlled study http://crohnsdad.files.wordpress.com...crohns2011.pdf
and the abstract for the 2007 study http://www.nature.com/ajg/journal/v1...g2007152a.html
08-15-2012, 08:50 PM   #30
Tesscorm
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Amyrenee, unfortunately, you're right in that, as far as I can find, there is one published study and one pediatric study yet to be published relating to Crohns - I certainly do wish that there was more solid evidence supporting LDN! I have spent hours trying to find more solid information, unfortunately, much of what I have read has been simply anecdotal evidence that people have found some success.

From what I have read, there have been success stories, some have experienced 'improvement' for only a short time and it has not worked at all for others. But, this is the case for most of our treatment options and LDN has much fewer side effects than any other crohns med. My son is in a position where he is fairly stable on EN alone but, recent tests are beginning to show that EN may not be controlling the crohns sufficiently and something more needs to be added. I 'think' he is at a point where we could afford to try LDN while continuing with EN to 'control' as much as possible while we 'try' (of course, while being monitored). Unfortunately, we are in the midst of transferring from a ped GI to an adult GI and are on 'hold' for now with additional tests, new GI's opinions on Stephen's condition and GI's opinion on LDN, etc.

Given the lack of scientific data, proof, studies, etc., I don't believe LDN would be the right treatment in all circumstances... I think the state of the disease, QOL, past treatment experiences must all be taken in account when deciding if someone can/should try LDN.

I wish could provide you with more definitive, scientific evidence! I did read a recent article in CCFC's publication discussing LDN. Here is the link:

http://efile.ccfc.ca/ccfc/2012JournalEngVol2.html
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